CMAJ (Canada) recommends exercise for CFS

[Justin30]

I feel this is where the disease needs to be defined in subgroups, stages or completely different diseases.

I am sick of us all being patient Drs.....I want us to be treated in a humane way and studied biologically.....

In 1 year MS research releases as many studies as we have had in the History of ME... ME was defined within years of MS...yet was not granted any treatments, solutions or maney yet impacts 3 x or more the amount of people...

Enough with the BS....CBT and GET Garbage....it ends in permanent deterioration in 95% of ME patients based on what I have read.....and in my experience

I was mild and became severe because I just did normal day to day things....one walk that was too long....well no s**** my aerobic system is messed up!

Real ME needs reel biological research....not the promotion of CBT or GET in anyway....PERIOD!

People lose their whole lives to this illness money, children, spouses and more....

There are likely over a million people locked away in dark rooms, unable to tolerate noise and sound, and whatever else....

You go tell a cancer patient to go search all over the internet looking for what tests they shoud have.....you go tell that cancer patient to try every medication and supplement know to man....you go tell that Cancer patient to Talk and Walk away his Tumor that is eating his body.....its a joke....WHY DO WE HAVE TO BE TREATED AS SO!

This is an absolute joke that we as members of a modern society are subjected to such crap....

Real ME is a Neuro Immune illness with devistating outcomes and leads to more comobidities then I can count on with my fingers and toes....

When Klimas said she would rather have HIV and that ME patients can be compared to those dieing of late stage AIDS.....

Do you think she was kidding??????

Do you wonder why so many go missing from this forum after 2, 3 , 4, 5 years......they either recover, get worse, get banned, lose their internet, or leave for unknown reasons....I have seen final posts from many that seem so sick....

Did you hear the about the young personal trainer that is now as severe as Whitney Dafoe....his name is Jamison...5 years is all it took

What about the countless books, documentaries, photos, youtube videos, etc. of suffering ME patients.....

I had Chronic Fatigue when I was tired from working to hard or lifting weights or whatever I was doing too much....this does not mean I had chronic fatigue syndrome...stress can make your sleep poor...so can a bad diet...so can an allergy....

ME shares similarities to CFS....personally I feel as though and many others do too that exercise in a person with ME makes them decline or deteriorate....

Not to mention I have heard from my Drs that people are fine then one day they just drop....Bedridden....cant get out of bed....its happened to many on this forum....almost like relapsing remitting MS....

The bottom line is that its BS exercise therapy that is pushed on us....when their is a downright biological hidden problem.....the Institute of Medicine Report says overexertion makes people worse.....

I am sick of the exercise, pace yourself crap, when their is a real biological illness at hand....

Do the research and stop the Harm!!!!!

 

[u&iraok]

Just going to throw this out there. As someone who has mild CFS I find exercise is very helpful in reducing/eliminating the effects of deconditioning. Whenever I thought that my condition had 'permanently worsened' it turned out the regular exercise eliminated this worsening. The improvement of deconditioning is incredibly slow and the exercise has to be paced. I do not not think my experience is out of line for those with mild CFS

Of course if someone's cfs is more severe it is a completely different circumstance

Panckage, do you mind giving more information as to your mild ME/CFS? I am categorized as mild but can't exercise. Are you very mild, say at 90% functionality?

 

[ukxmrv]

It would be very unusual for ME/CFS. Studies have shown no objective improvements from GET or CBT incorporating GET, even when featuring only mild and moderate patients.

It might be a ME vs CFS difference

Dr Ramsay described his patients deterioration with "trivial" exertion. ME patients like myself from the era used to do "aggressive rest therapy" and did not deteriorate with this.

Some CFS definition don't include worsening after exertion.

Panckage is using CFS not ME so I assume that that is deliberate choice and therefore correct.

 

[JaimeS]

It would be very unusual for ME/CFS. Studies have shown no objective improvements from GET or CBT incorporating GET, even when featuring only mild and moderate patients.

Agreed. I am 'mild' -- able to work part-time, verging on full-time -- and that has no impact on the fact that exercise makes all my symptoms catastrophically worse. Even mild 'exercise' like walking around shopping is rough, though it doesn't cause PEM. This is not deconditioning in and of itself, because I do it anyway, regularly, to avoid atrophy and to get out of the house!

I think we're looking at the difference between subgroups, though it has been suggested that without PEM, it's not ME. I'm not sure I 100% buy it. There are probably PWME who benefit from gentle exercise so long as they don't push. I'm not one of them.

-J

 

[panckage]

It would be very unusual for ME/CFS. Studies have shown no objective improvements from GET or CBT incorporating GET, even when featuring only mild and moderate patients.

I have never done GET and in order to exercise I require ritalin. There appears to be zero research detailing the use of ritalin (methylphenidate) by PWME in an exercise study in pubmed


@*GG* I think this is what Hip quoted for mild, moderate and severe CFS:
http://patient.info/health/chronic-fatigue-syndromeme

Mild cases - you can care for yourself and can do light domestic tasks, but with difficulty. You are still likely to be able to do a job, but may often take days off work. In order to remain in work you are likely to have stopped most leisure and social activities. Weekends or other days off from work are used to rest in order to cope.

Moderate cases - you have reduced mobility and are restricted in most activities of daily living. The level of ability and severity of symptoms often varies from time to time (peaks and troughs). You are likely to have stopped work and require rest periods. Sleep at night tends to be poor and disturbed.

Severe cases - you are able to carry out only minimal daily tasks such as face washing and cleaning teeth. You are likely to have severe difficulties with some mental processes such as concentrating. You may be wheelchair-dependent for mobility and may be unable to leave your home except on rare occasions, and usually have severe prolonged after-effects from effort. You may spend most of your time in bed. You are often unable to tolerate any noise, and are generally very sensitive to bright light.

Note: most cases are mild or moderate.

@u&iraok according to:
http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are
My level is at 60 or maybe a bit below that

 

[JaimeS]

@u&iraok according to:
http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are
My level is at 60 or maybe a bit below that[/QUOTE]

My level is about 60-70, but I still have PEM. I don't think it's a function of severity alone.

-J

 

[panckage]

My level is about 60-70, but I still have PEM. I don't think it's a function of severity alone.

Just to be clear I have never said that I don't suffer from PEM. My ordinary activities don't seem to lead to 24hr+ PEM but if I spend a whole day out (eg. Relaxing at the beach) I am usually bad for a few days. Also the couple times I have tried running I was also particularly bad for the next few following days

 

[ScottTriGuy]

in order to exercise I require ritalin. There appears to be zero research detailing the use of ritalin (methylphenidate) by PWME in an exercise study in pubmed

Interesting - any guesses why that is?

 

[JaimeS]

Interesting - any guesses why that is?

It's an upper, but that sure doesn't explain why a crash doesn't follow!

 

[panckage]

Interesting - any guesses why that is?

I wrote a bit about it in this thread
http://forums.phoenixrising.me/inde...e-find-exertion-not-related-to-crashes.38509/

Basically on my exercise bike my heart rate only gets to about 110bpm drug free. I start to feel faint and have to stop a few minutes later. It feels like my metabolism does not increase to meet the increase energy demand so I feel faint because my body cannot produce enough energy. Basically my body is like a car stuck in first gear

OTOH when I take ritalin my heart rate goes in the normal range when I exercise andI can last about 30min on my exercise bike with my 130-140 average bpm. Ritalin appear to improve my metabolic rate partially

 

[BurnA]

Basically on my exercise bike my heart rate only gets to about 110bpm drug free. I start to feel faint and have to stop a few minutes later. It feels like my metabolism does not increase to meet the increase energy demand so I feel faint because my body cannot produce enough energy. Basically my body is like a car stuck in first gear

I am mild, i work fulltime but i wouldn't consider exercising.
A trip to the shops can give me PEM.

I find my HR goes from 60-70 ( resting) to 120 as soon as i walk for a minute or two.
In the early days, before i was diagnosed, I tried gentle cycling and my HR went to 188 and maxed out. It was the only time I had ever seen it that high despite being a keen cyclist for years before.

 

[Justin30]

RITALIN AND CNS STIMULANTS

USES IN CFS/ ME. CNS stimulants are generally used to increase energy and cognitive function. The two drugs most commonly recommended for CFS/ ME patients are Cylert (pemoline) and Ritalin (methylphenidate), although Dexedrine (dextroamphetamine) is also sometimes prescribed. Lonamin (phentermine), a mild CNS stimulant that activates dopamine in the brain, is sometimes recommended in CFS/ ME patients with hypersomnia or significant cognitive impairment. The mild stimulation induced by a low dose of any of these drugs can often dispel feelings of lethargy and “brain fog”and, because effects are so immediate, they can act as a quick fix in an emergency. While there is great appeal in seeing immediate improvement in energy levels and cognitive function, most CFS/ ME clinicians prescribe these drugs with caution. Dr. Cheney believes that the disabling fatigue of CFS/ ME may be a protective mechanism. Therefore, creating energy artificially may in the long run cause relapse and may even exacerbate the disease process. PROTOCOL. Dosage varies according to the individual needs of the patient, as determined by a physician. Patients with CFS/ ME, however, are advised to start with the smallest dosage to avert the negative effects of overstimulation. Dexedrine, for example, is prescribed at the lower than usual dose of 5 to 10 mg. Lonamin dosage varies between 15 and 30 mg (taken in the morning). For the subset of CFS/ ME patients with fibromyalgia, Dr. Bateman recommends Adderall, starting with the lowest dosage and working up to 5-20 mg. two to three times a day. Dr. Bateman also uses Provigil (modafinil) 50-400 mg (long-acting) as well as Wellbutrin, a stimulant antidepressant. Dr. Lapp recommends using low doses of CNS stimulants such as Ritalin, Adderall or Provigil for fatigue. Dr. Lapp has found that “Provigil not only improves fatigue, but also somnolence, mental clarity, attention deficits, and depression." Surprisingly, while Dr. Teitelbaum advises that CFS/ ME patients steer clear of coffee, he recommends 10-30 mg of Ritalin taken three times a day up to a maximum of 60 mg/ day. Dr. Teitelbaum observes that “the medications ritalin and dexedrine can be very helpful at lower doses in those with chronic fatigue syndrome, as they help stabilize the low blood pressure and the low dopamine levels found in chronic fatigue syndrome.”Dr. Rowe recommends that ME/ CFS patients with orthostatic intolerance take low doses of vasoconstrictor medications, including Ritalin and Dexedrine to treat blood pooling. He recommends 5 mg in the morning repeated, if necessary, four hours later. PROS. It appears that the less ill the patient the better the response. The boost received from these drugs may enable patients with mild symptoms to work full-time or part-time. Most people use CNS stimulants on an "as needed" basis to provide extra energy on particularly long or important days. Many patients report a lessening of “brain fog”as well as increased focus and stamina. Doses for these patients have been very small. CONS. Whereas CNS stimulants have been effective in some patients, they are of modest to little benefit for most. Stimulants, while appearing to provide more energy, tax the system. As a consequence, they are beneficial only if the system is strong to begin with. A number of patients report feeling much worse while taking stimulants. The most common side effects are anxiety, excitation, insomnia, gastrointestinal problems, dizziness, headache, palpitations, dry throat, appetite loss, chest pain, and hypertension. Patients also report that Ritalin causes anxiety and paranoia. With nearly all CNS stimulants, patients report rebound fatigue after the drug wears off. As with other medications that affect the CNS, some patients experience a paradoxical reaction of extreme fatigue and weakness. Drug interactions are numerous, including antidepressants (especially MAOIs), anticonvulsants, and caffeine. As with MAOIs, foods high in tyramine should be avoided (see Urinary Tract Problems). CNS stimulants are contraindicated in patients with cardiovascular disease or hyperthyroidism. AVAILABILITY AND COST. CNS stimulants are available by prescription, either as brand name or generic drug. Most of the older varieties are fairly inexpensive. Ritalin, for example, costs about $ 25 a month. Provigil, a newer drug, costs upwards of $ 250 a month. Insurance usually reimburses the cost.

 

[Justin30]

I guess what gets me is that their was a poll done that over time people deteriorated.....doing just normal activity....

What bothers me is that I still could be in a relapse....hope so....a long ass one...

I went to one CBT meeting for men with this illness and they discussed the uncertainty of the future....

My Drs talked about exercise and the harm it causes...

Some Drs say each episode of PEM is like doing more damage to the brain...i think Leonard Jason.

Regardless......i know I could push through and do more but with what end result....

There is a reason why the people that have been treating it for 30 or nore years say we need a CENTER of Excellence.....

When DXed they never did a SPECT SCAN, PET SCAN, COMPLETE VIRUS PANEL, AUTOIMMUNE PANEL, spinal tap, stool analysis, etc......

I had to go to the US.

So my problem is is that with public healthcare all you get is Oh you have CFS as per this criteria lets start the experiment!

Instead of maybe we should some investigation to determine if you have something else because CFS..ME or whatever you want to call it can ruin your life....

This is why we need hospital stays and thorough work ups because likely the most severe may have had another cause of Encephalitis or Encephalomylietis but because the heathcare systems are just wanting you in and out....people dont even get a fair chance at recovery...both these situations need IVIG or Corticosteroids or IV Antiviral Drugs....these 2 forms of brain and spinal cord injuries can have a good outcome should treatment be given at onset...if the Drs even do something about it let alone open their ears to listen to the patient...not to mention both forms can be mild if you look into personal experiences....not what the literature publishes that it is a clearly defined highly acute situation....this is BS..

If you are acutely sick and mirror ME/CFS Symptoms at onset you should be held told not to move and kept in hospital....with the potential of getting a steroid to reduce the high spikes if inflamation at onset....

I pissed that I have lost many freedoms now when certain Drs in the states if contacted could have guided a physician elsewhere....instead oh you just have CFS and the testing stops.....

We dont need exercise....we dont need CBT...

WE NEED RESEARCH, TREATMENT AND COMPOTENT PHYSICIANS.

 

[Justin30]

This is why things are so muddled and confusion is made between ME and CFS:

The Ramsay Definition for Myalgic Encephalomyelitis
(1986)

“A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:

(1) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

(2) Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

(3) Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

(4) A characteristically chronic relapsing course."

From "Myalgic Encephalomyelitis - Then and Now. An Epidemiological Introduction" (Chapter 7 in Clinical and Scientific Basis of M.E./CFS):

"Nomenclature

"The illness, though similar to non-paralytic poliomyelitis in many clinical aspect, could clearly be distinguished and was diagnosed as Benign Myalgic Encephalomyelitis. This name gives a clearer clinical description than many of the eponyms used previously (Iceland Disease, Akureyri's Disease, Epidemic Neuromyasthenia) or invented subsequently (Post viral syndrome, Chronic Fatigue Immune Dysfunction Syndrome). These share the common disadvantage of obscuring the world-wide incidence or of trivializing the clinical severity of the illness."

Dr. Ramsay, together with Dr. Dowsett, listed this criteria for M.E. in 1990 in the same article (just prior to his death):

"We adopted the following criteria:

"A syndrome initiated by a viral infection commonly described as a respiratory/gastro intestinal illness but a gradual or more dramatic onset following neurological, cardiac or endocrine disability is recognised.

"The cardinal features, in a patient who has previously been physically and mentally fit, with a good work record are:

(1)Generalised or localised muscle fatigue after minimal exertion with prolongedrecovery time.

(2)Neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal.

(3)Variable involvement of cardiac and other bodily systems.

(4)An extended relapsing course with a tendency to chronicity.

(5)Marked variability of symptoms both within and between episodes."

 

[me/cfs 27931]

Just going to throw this out there. As someone who has mild CFS I find exercise is very helpful in reducing/eliminating the effects of deconditioning.

Personally, I find mild exercise beneficial (and enjoyable) during a remission, but harmful during a relapse.

My relapses and remissions typically last 1-4 years each and I've been through 9 of these cycles in my lifetime. So, for me personally, I have some confidence in this changing definition of exercise.

Right now I'm roughly 2 years into a bad relapse, and dream (literally) of not being housebound and once again doing some mildly active things.

 

[Justin30]

The bottom line is Ramasay and others have had this pinned for decades....

the have treatments for Encephalomylietis = iys called IVIG, Cortico steroids, and enduced comas....does not matter what type of Encephalomylietis.....

Further

If its just Encephalitis it is IV antivirals

Further

If brain imaging CT, MRI, SPECT, etc were just done when the person comes into the hospital after a this flu and says my brain feels weird almost foggy, i am having troubles staying asleep, I am having troubles getting around, I have some numbness and tingling, if they connect the dots and actually listen.....then their is a chance of something getting done......

Do a spinal tap to see if an infection has gotten into to the CFS.....I just dont get it it seems like it doesnt take Rocket Science the information has been avaialble for years....

There are so many types of encephalitis and encephalopathy.....they can be dealt with....and at least give a person a chance to get better...

 

[Justin30]

Personally, I find mild exercise beneficial (and enjoyable) during a remission, but harmful during a relapse.

My relapses and remissions typically last 1-4 years each and I've been through 9 of these cycles in my lifetime. So, for me personally, I have some confidence in this changing definition of exercise.

Right now I'm roughly 2 years into a bad relapse, and dream (literally) of not being housebound and once again doing some mildly active things.

Thanks for sharing....I hope thay maybe I am just in a prolonged 5 month relapse....

Regardless years of relapse, months or relapse is to long!

If overexertion is tge cause then get rid of CBT and GET when obviously the body is messed up....

 

[BurnA]

The thing is, there will always be a small percentage of patients who find different things to be effective.

However this doenst mean these items become part of a recommended treatment plan.
Anything recommended should be based on good quality clinical trials.

We have no good evidence that exercise is beneficial for pateients, and we have some bit of evidence to say it is not recommended or that ME patients are intolerant to exercise.

 

[Justin30]

The thing is, there will always be a small percentage of patients who find different things to be effective.

However this doenst mean these items become part of a recommended treatment plan.
Anything recommended should be based on good quality clinical trials.

We have no good evidence that exercise is beneficial for pateients, and we have some bit of evidence to say it is not recommended or that ME patients are intolerant to exercise.

I totally agree with you the research is just not there...

I dont think walking for 2 minutes and having your HR go up 60-70 BPM is good for your heart and shows a clear dysfunction of the ANS or Endocrine dysfunction likely both.

This being said the IOM stated that of all the lterature we have to date this is clear that exertion passed a different point for everyone causes an increasing or worsening of symptoms....

I guess what I am trying to get to is that it should not be promoted until...the person has been thoroughly evaluated by an expert clinician......

Where barely any exist

 

[meadowlark]

I stumbled upon an article ...

Thanks so much, Old Bones. I sent the writer an e-mail. I'm in Canada, with family in Kingston. Not that I wouldn't have e-mailed anyway, but I hate to think that my relatives may have read this.

I have bad brain fog today. Can someone tell me if there's a way to email the CMAJ? (Apologies if there's a post about this and I haven't absorbed it.)